Caregiver Wellness - Mind Health

Mother Teresa once said, “Loneliness and the feeling of being uncared for and unwanted are the greatest poverty.”

I’ve often found it ironic that at the center of the mental and emotional struggles of both caregivers and the cared-for, is a wrestling with the same poverty of soul.  Just as those who are disabled and dependent may feel isolation, loneliness, and unwantedness, those who are caring for them can also struggle with the same emotions - albeit from a different perspective.

Caregiver Burden

According to the APA Dictionary of Psychology, Caregiver Burden is “the stress and other psychological symptoms experienced by family members and other nonprofessional caregivers in response to looking after individuals with mental or physical disabilities, disorders, or diseases.”

Cleveland Clinic nuances that definition using the word “burnout” instead:  “Caregiver burnout is a state of physical, emotional and mental exhaustion that happens while you’re taking care of someone else. Stressed caregivers may experience fatigue, anxiety and depression.”

If you’ve been an informal family caregiver for even a relatively short amount of time (3-6 months), you can be experiencing caregiver burden… or even burnout.  

As an exercise in curiosity, I initiated a conversation with ChatGPT on Caregiver Burden.  This is part of the transcript:

What is caregiver burden and how do I know if I have it?

Caregiver burden refers to the physical, emotional, and psychological stress that results from caring for a person who is chronically ill, disabled, or otherwise in need of long-term assistance. It can affect family members or friends who take on caregiving responsibilities, especially when those responsibilities are extensive, prolonged, or emotionally taxing.

🔍 Signs You Might Be Experiencing Caregiver Burden

Here are common indicators:

1. Emotional Symptoms
:
Feeling overwhelmed or constantly worried
Irritability, mood swings, or frequent crying,
Feelings of helplessness or hopelessness

Guilt (e.g., for not doing enough, for feeling resentful)

Depression or anxiety symptoms

2. Physical Symptoms:

Fatigue and exhaustion, even after sleeping

Difficulty sleeping (insomnia or oversleeping)

Headaches, body aches, or unexplained pain

Changes in appetite or weight

3. Cognitive/Behavioral Changes:
Difficulty concentrating or memory problems

Withdrawing from friends, family, or activities you used to enjoy
Increased use of alcohol, medications, or other substances

Neglecting your own health appointments or needs

4. Impact on Daily Life:

Trouble managing work or personal responsibilities
Financial stress due to caregiving costs

Feeling like caregiving is taking over your identity

🧭 Self-Assessment Tools

You can use tools like the Zarit Burden Interview (ZBI), a widely used questionnaire to evaluate caregiver burden. It asks questions about how caregiving affects your health, social life, emotional state, and finances.

⚠️ When to Seek Help

You should consider speaking with a healthcare provider, therapist, or support group if:

1 These feelings persist over time

2 You're neglecting your own health

3 You're experiencing thoughts of harming yourself or the person you're caring for

4 Your relationships or job are being affected

💡 Coping and Support

1 Respite care: Take breaks with the help of other family, friends, or professional services

2 Therapy or counseling: Helps manage emotional impact

3 Support groups: Share experiences and gain encouragement from others in similar situations

4 Education: Learning about the condition you’re dealing with can help you feel more equipped

5 Time management: Prioritize tasks and set realistic goals

6 Ask for help: You don’t have to do everything alone

I have to say, I was pretty impressed with that response from ChatGPT!  I even allowed it to walk me through an assessment and provide recommendations on next steps.  (Now, I don’t advise solving mental health issues via ChatGPT, but it can be a great resource to lead you to other authoritative sources.)

My Personal Struggle with Caregiver Burden

Last blog installment, which was months ago now, focused on body wellness.  I believe there is a saying that goes “as the mind, so goes the body”.  Your physical health can be dramatically impacted by your mental health and your ability to adequately cope with stress.  The reason for the incredible delay in this blog post is quite frankly due to my own struggle with and pursuit of mental wellness.  My undealt-with stress (from several years of caregiving, compounded with a highly stressful work environment) had led to the development of some physiological symptoms I could not get under control.

But it wasn’t just physical symptoms that were becoming acute, it was also spiritual unwellness ( a topic I’ll dive into in the next installment ).  I had felt a growing disinterest in the things that I had former passion for, heaviness all the time, an inability to experience joy, and a hopeless outlook that made everything look so much bigger than it probably was.

I believe it was Vince Lombardi who said “Fatigue makes cowards of us all”.  It’s certainly true that the more overwhelmed, stressed, and emotionally and psychologically fatigued, the lower your ability to cope with even the smallest things.

How does one recover when the burden feels so great?

The good news is that the human mind, body, and spirit are all far more resilient than we realize!  And when you factor in the transformative and healing power of the Spirit of Christ within, our capacity for renewal is vast.  BUT, there is effort and decision making required.  Caregiver Burden may be unavoidable but it is not a sentence of defeat.  It is rather a call to rally in ways you may have never considered.  It’s a call from God to develop character and capacities in you that would never develop otherwise.  But we do have to be willing to make some changes to experience that help and renewal.

If any of those ChatGPT-listed symptoms above resonate with you, read on!

Seeking Relief from Caregiver Burden

Avail yourself of Caregiver Resources

The first step in pursuing mental wellness in the caregiving journey is understanding what’s available to you.

The Caregiver Action Network is a wonderful resource and networking hub for tooling yourself as a caregiver and linking arms with other family and informal caregivers.  Consider some of these resources:

• 10 Tips for Family Caregivers: Balancing Caregiving and Self-Care

• Caregiver Self Care Checklist: Managing Stress and Support Groups

• Understanding Caregiver Stress Syndrome & Strategies for Coping

Battle Loneliness and Be Honest with Yourself

With loneliness and isolation being such a persistent theme in caregiving, seeking out ways to maintain human connection (both in the cared-for relationships and outside) is paramount.  CaringBridge (another great caregiver resource) offers these suggestions for spousal caregivers, though they are relevant no matter the relational dynamic:  Battling Loneliness as a Spousal Caregiver.

Taking personal inventory and leveling with yourself is also important.  You have to recognize you cannot take on the burden alone. As Peter Scazzero says in Emotionally Healthy Spirituality,  

“The core spiritual issue here relates to our limits and our human-ity. We are not God. We cannot serve everyone in need. We are human… As Parker Palmer said, ‘Self-care is never a selfish act — it is simply good stewardship of the only gift I have, the gift I was put on earth to offer others. Anytime we can listen to true self and give it the care it requires, we do it not only for ourselves, but for the many others whose lives we touch.’"

Once we have humbly come to own our limitations, we are in a better place to ask for help from others.  This is critical, and leads to another suggestion - 

Connect with Other Caregivers

This is advice you’ll hear echoed throughout caregiver-focused websites, studies, and in the group meeting rooms throughout the caregiver universe.  Connecting with others who are walking the caregiver path is so crucial in combating isolation, honestly assessing your emotional and spiritual health, picking up resources and helpful perspectives from other veteran caregivers, and maintaining optimism, confidence and even joy in your journey.

At Providence Church, we are fortunate to have ministry leadership that understands and supports this need (and you are certainly welcome to connect with our caregiver care group if you are in the greater Nashville/Mt Juliet area -https://prov.church/sign-ups/care-groups/  ).   There are also multitudes of online support groups hosted and sponsored by a variety of caregiver support agencies and organizations.

Don’t Ignore the Signs for Needing Immediate Help

If your signs of burnout are high based on those symptoms listed above, you may need some immediate help.  Fortunately, there are a number of resources available to you as a caregiver experiencing acute stress.  

Checkout these options:

• Get practical help and emotional support from social workers at Caregiver Action Network’s help desk, open from 8 am to 7 pm Eastern time.

• The Rosalynn Carter Institute for Caregivers crisis line offers 24/7 text-based mental health support; text TOUGH to 741741. 

• Take a quiz from the advocacy organization Archangels to identify your caregiving intensity level and get connected to resources.

Whatever the avenue, the most important first step is to reach out.  You are not alone, and there are many more resources available to you than you may realize.  It's a refrain you’ll hear from us often - Caregiving is a sacred calling.  But, it is a sacred calling that takes a heavy toll, and is not meant to be walked alone.